91% of lupus patients report using steroids to manage symptoms

Global survey highlights urgent need for treatments with fewer side effects

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by Mary Chapman |

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About 91% of lupus patients report they are currently taking or had been using oral steroids to manage their symptoms, according to a global survey of more than 7,700 patients.

The World Lupus Federation (WLF) released findings from the survey ahead of World Lupus Day, observed May 10 to call attention to the chronic disorder in which the immune system attacks the body’s own healthy tissue. The survey was completed by 7,741 patients from 108 countries.

“These survey results, unfortunately, confirm how reliant people with lupus are on steroids, including over long periods of time, and they underscore the urgent need for more lupus treatments to become available that won’t have such significant side effects,” Susan Manzi, MD, medical director of the Lupus Foundation of America, said in a press release.

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More than 5M people live with lupus around the world

More than five million people globally are thought to be living with lupus, a condition that can cause a broad range of symptoms. The primary goal in treating lupus is to mitigate the autoimmune response that causes the disorder, manage its symptoms, and prevent organ damage.

While each patient journey is different, treatment options often include corticosteroids, also known as steroids, to lessen the pain and inflammation that can accompany lupus. Such therapies, like prednisone, work to reduce the activity of overactive immune cells.

To prevent side effects from steroids, doctors typically prescribe the lowest dose necessary for therapeutic efficacy, then wean patients off of the medications. Known side effects from the use of prednisone — one of the most common steroids — include face puffiness, mood swings, and increased appetite and resultant weight gain. Long-term use can cause other health problems, such as infections, osteoporosis, and diabetes.

The survey indicated 75% of respondents had been using steroids for more than a year, and 27% had taken them for at least a decade. Also, 43% of respondents reported taking daily dosages that typically exceeded the recommended daily doses of 5-7.5 mg. Further, 58% of participants reported taking dosages of 30 mg or more. About 96% of respondents indicated concern about the long-term effects of steroid use, and 90% were concerned about short-term use.

Respondents with lupus nephritis, a common lupus complication marked by kidney damage and inflammation, were more likely to take steroids at higher doses and for longer durations, and to report major side effects.

Six in 10 survey respondents reported experiencing at least one major side effect, such as diabetes, heart disease, osteoporosis, organ failure, or vision impairment. That figure was even higher among those who had been taking steroids for more than five years.

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95% report at least 1 side effect from steroid use

About 95% of those who reported steroid use indicated experiencing at least one of the 19 potential side effects listed. Patients reported experiencing an average of six side effects, the most common being weight gain, which was experienced by 77% of respondents, followed by mood swings in 54%, appearance changes in 53%, insomnia in 52%, increased appetite in 51%, and hair loss in 50%. Ninety percent reported steroid use helped to ease their lupus symptoms.

Moreover, 39% of respondents reported not being asked for input by their doctors about steroid usage, and 29% said their doctors wanted them to continue taking steroids even with controlled symptoms. Some 23% indicated they were not warned by their doctors about possible negative effects of long-term steroid use.

“We know that steroids can reduce inflammation and help people with lupus to manage the disease, but we also know that steroids cause a range of side effects and can lead to other serious health problems,” Manzi said.

To mark World Lupus Day, the WLF encourages supporters to share the survey’s results, which are also available in summary form, as well as other lupus facts. The organization also offers a toolkit to help spread awareness and advocate for the lupus community.

Toolkit resources include tips for sharing stories, lupus signs and symptoms, logos, graphics in English and Spanish, customizable templates, and sample social media posts using the hashtags #WorldLupusDay and #MakeLupusVisible.

There is also help for the “Light Up the World” campaign, in which landmarks are illuminated in purple, the color representing lupus. In addition, assistance is available to help with requests to local governments to officially recognize World Lupus Day.